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Monday, March 30, 2015

Alzheimer’s Advocacy Forum 2015

I joined 1,100 other focused and dedicated advocates in
Washington, D.C., to take our message to Capitol Hill. As always a highlight
for me is to meet my long-term (fifteen years!) friends, and sisters of the
heart, Sarah Harris and Kathy Siggins. This is the one time each year we get
together, talking non-stop until we get caught up. Once we enter the forum, we’re
focused on the message.

The first training session for ambassadors began
immediately following lunch on Monday. The program began with an exercise.
Everyone was asked to shout his or her name. Of course, the result was a loud, indecipherable
noise. Yet when everyone whispered in unison “Alzheimer’s is the most expensive
disease in America,” it was easily understood. This demonstrated the impact of
everyone being on the same page and delivering the same message.

Our mission was for Alzheimer’s advocates to deliver our
federal priorities to our senators and representatives.

1.Increase
the commitment to Alzheimer’s research by $300 million. The current level of
investment is $586 million. Even with the increase, this amount is far short of
the $2 billion annual estimate to implement the steps toward meeting the goal
of a cure or effective treatment as set forth by the National Alzheimer’s Plan.

2.Co-sponsor
the Hope for Alzheimer’s Act. During the Forum, the Act was re-introduced with
a focus on care planning and documentation of medical records. This act is
consistent with the National Alzheimer’s Plan

The cost of caring for individuals with Alzheimer’s is a
staggering $226 billion. One in every five Medicare dollars is spent on people
with Alzheimer’s disease. These numbers will only continue to increase as the
baby boomers age. By 2050, the cost of Alzheimer’s care is expected to reach $1.1 trillion per
year. The only way to avoid this pending economic crisis is to find an
effective treatment or cure for Alzheimer’s disease.

Research today is exciting and we seem to be on the cusp of
finding the key to unlock the elusive cure for Alzheimer’s. New studies have
shown great
promise. New technology allows scientists to see beta amyloid plaques and tau
tangles in living brains. Now, the effectiveness of treatments can be measured
through this imaging.

A breakout session on social media showed us how to use
tools provided by the Association to share highlights of the session via social
media—Twitter and Facebook. We participated in a “Thunderclap” that released
hundreds of tweets and Facebook posts as we began our Hill visits. The
Association also re-tweeted any tweets containing #ALZFORUM or #ENDALZ. During
the National Alzheimer’s Dinner, tweets were displayed on the screens,
including several of mine.

All fifty states were represented during the roll call of
the states. The most poignant moment during the roll call was an advocate
accompanied by his wife who had Alzheimer’s. My heart went out to both of them.

Dr. David Satcher, former U.S. Surgeon General presented the
keynote. He focused on leadership and teamwork. He said, “everyone teaches and
everyone learns.” Dr. Satcher said,
“Leadership is like a relay race.” It doesn’t just depend on how fast you run,
but whether you have the baton at the finish line. “If you drop the baton, the
race is over.” He read a poem his wife, Nola, had written for their wedding
reception, “I’ve Never Been Here Before.” Nola was diagnosed with Alzheimer’s
fifteen years ago giving a new meaning to the poem.

Periodically, throughout the meeting, advocates and people
with dementia would tell why they were advocates. The most delightful person to
speak was Amy Shives. She said she was diagnosed at fifty, as was her mother,
with dementia of the Alzheimer’s type—atypical. She never considered herself to
be typical anyway. She said that people with Alzheimer’s did not like to be
called “sufferers” because they are people, not the disease. “If you’ve met one
person with Alzheimer’s; you’ve met one person with Alzheimer’s.” Amy said that
now she could wear her new shoes even if they don’t match her dress. Her first dog, Chester, alerts her
when she is going to have seizures. She freely admitted that her cat doesn’t
care. Her husband, George, is her care partner and she loves him more than
ever. Amy is being considered for an appointment to next year’s Alzheimer’s
Association Board of Directors.

Lisa Genova, author of Still
Alice, received the Sargent and Eunice Shriver Profiles in Dignity Award. Lisa
was at the 2008 Alzheimer’s Forum speaking to an early stage group and selling
her self-published book. I bought a book from Lisa during that long-ago Forum
prepared to be disappointed. Boy, was I ever wrong! I was so impressed by Still Alice that when a student I was
mentoring wanted to know what Alzheimer's book to review, I recommended Still Alice. The book was later
published by Simon & Schuster and spent 40 weeks on the New York Times bestseller list and sold 2.1 million copies in 30 different languages. The movie,
starring Julianne Moore, has followed a circuitous route to become an acclaimed
movie co-produced by Elizabeth Gelfand
Stearns, chair of the Judy Fund, who read the book in one night.

On Wednesday, we stormed Capitol Hill. Jessie Kwatamdia,
Marcia Rauwerdink, and I along with other advocates visited Senator Blunt and
Claire McCaskill’s offices. We three then visited with Congresswoman Hartzler,
where we received a warm reception. After our visits, Jessie and I attended the
Senate Hearing on the Fight Against Alzheimer’s, Senator Susan Collins, chair,
and Claire McCaskill, ranking member. Missouri advocate Kim Stemley, a young caregiver for
her mother, gave a powerful, on-point testimony.

The influence of 1,100 dedicated advocates, wearing purple
sashes, each delivering the same message, punctuated with personal stories, leaves a lasting impression on
our legislators. Collectively, we
are influential, but we are unstoppable as individuals who advocate throughout
the year.

I am thankful to once again be part of this group and look forward to returning for my
sixteenth Advocacy Forum April 4 – 6, 2016, to make sure our voices are not
forgotten.

One of Healthline's Top 20 Alzheimer's Blogs

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Third Place in the 2013 Contest!

One of Healthline's Top Blogs

Voted one of Healthline's top blogs of 2012--4th Place in the Contest

Early Onset Blog in Top 25 2011 Alzheimer's Blogs - Healthline.com

Early Onset Alzheimer’s

This award-winning blog is a must-read for individuals experiencing early-onset Alzheimer’s. Less common than standard age-related dementias, early onset Alzheimer’s is virtually always a surprise to diagnosed individuals. Linda Fisher, blogger and author, knows the difficulty of this condition firsthand.

In her Early Onset Alzheimer’s blog, she teaches readers not just how to manage such a frightening condition, but also how to live life to the fullest. Her passion for helping others – showing everyone that life with Alzheimer’s is worth living – is a tremendous gift. Thank you, Linda!

Blog Awards

Early Onset Blog has received several blog awards. Due to new Google regulations, the links had to be removed. Past awards have included the #1 Health Blog , Top 10 blog in 2010, Top 25 Blog award in 2010, and a Top 50 award in 2012. We appreciate the recognition, but also understand the need to remove the links.

When Jim returned from Vietnam, he was stationed at Fort Riley, and we spent about a year and a half living in Manhattan, Kansas. With ba...

Linda's Blog Books

Books are a print version of Linda's award-winning Blog. These books are published for the benefit of those without Internet access or who just prefer to curl up with a book rather than browsing online. If you enjoy Linda's blog posts, you might want to purchase the book for a friend or family member.

Fisher began her online journal to share her experiences with families affected by early onset dementia. Her essays provide insight into family life often from a humorous viewpoint. She writes from her experiences as a longtime Alzheimer's Association volunteer and advocate and ten years as a primary caregiver for her husband, Jim.

Early Onset Blog

Alzheimer's Anthology of Unconditional Love by L. S. Fisher

The Fisher Center for Alzheimer's Research Foundation

I have participated in a link exchange with the Fisher Center for Alzheimer's Research Foundation. They have this blog http://earlyonset.blogspot.com/ listed in their Alzheimer's blogs.

Lindsay Nason wrote about my Early Onset Blog: "I want to thank you for sharing your powerful experience and your creative suggestions with others. . . . Your blog offers a unique and personal insight into this disease, which can be such a comfort to other members of the Alzheimer's community."

Thank you, Lindsay, for your kind words and for including the Early Onset Blog on your website.